My friend is 76 years old and suffers from COPD and heart issues. We
hospice at home and he sleeps in a power recliner for comfort. He started visions/hallucinations and wants to get up out of his chair. Hospice nurse comes once a day on a schedule and today for the first time, I called for a nurse to come over in the middle of the night.

Sometimes he just says, "Up, Up, Up", or "Please, let's go". While saying these things, he scoots to the edge of his recliner and puts his good arm out (lost use of right hand when he had his first stroke in his 30's) and wants me to help him stand. I have helped him up a couple of times, but fear he will fall and pull his catheter out.

He has swelling in his legs and can briefly stand with my help. I don't know what else to say when he asks me to help him up. Sometimes it seems he is looking through me. I promised him I would be here for him and not let him die alone.

I fear that if I stop helping him stand up and agreeing to his wishes, he will feel betrayed and not trust me. His medications do help but as the days go by, they are increased and changed as his body fails. What should I and can I do?

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Hi Irish Eyes,
You sound wonderful and caring. I can see how scary this is. Have you asked the hospice nurse how to cope with this? Sometimes we caregivers are torn between helping our love one do what he or she wants all the while knowing that it's risky.

I will say that this stage isn't likely to last long. It's possible the hospice nurse can talk with the doctor about the hallucinations, since that could be caused (or made better) by a change in medication.

You need to ask yourself if you will feel guilty if he falls and gets hurt. Again, I'd talk with the hospice nurse and/or doctor and ask directly what is the best way to handle this.

Take care of yourself, too,
Helpful Answer (0)

He is ready to go, but the "up" is farther than you can take him. If you are his closest friend, please release him on a spiritual level, through prayer. He may be asking and reaching out to those he "sees." It's a transitional time. Bless your heart for all you are doing. Just keep him safe and comfortable. xo
Helpful Answer (5)

I thank each and every one of you for you advice,experiences and support.
After a very long and upsetting day, we finally had a breakthrough, thanks
to everyone here!

Don and I have not been able to communicate very well for a couple of days.
I try as hard as I can to "decipher" his sounds and hand motions and it
becomes VERY frustrating for him. He has had pain on the left side of his
body for the last 2 days. He has physically and verbally avoided taking
medication. He also refused my help in both ways. It came to a point he
starting to moan a try so hard to readjust in his chair but could not
find a position that he could stand. Yet, he refused medication.

After reading everyone's kind words and advice, I said to Don, "It's just
you,me and God....we have to find a way to communicate". I then asked him,"Does
something happen that you don't like when you take your medication?". He
responded with a weak but understandable, "Yes". WOW! Needless to say,I
was shocked! It all came down to not wanting to be "knocked out".

Since we had this moment of communication, I started to explain how I came to
find I told him that numerous people on the site have had similar
experiences and valuable advice. I explained the Haldol information and some
reactions of patients. I asked if he would like to stop using it to see what happens.
He shook his head up and down! WOW!

Since he was still "with me", I offered a suggestion. I would read every bottle to
him before preparing his oral syringe, so that he knows it is for pain and shortness
of breath. Not "agitation" or to "relax" him to sleep. He breathed in deep and exhaled with a slow nod up and down of his head. I offered that if he needed something different and he wanted to take a nap, we could use Loraz if he chose. He has used Loraz for a while, with no bad outcomes. He agreed again. WOW!

I will move past some things, it is too painful and infuriating to speak of right now.
A brief step back, I called and lefta message at a local Catholic church yesterday requesting Sacraments for Don. A priest called and arrived at our home shortly after the call. There was some confusion, he thought I needed the Anointment. That was cleared up and he proceeded to ease the way home for Don.

It was very overwhelming for my friend. While accepting The Father, he tossed and turned in pain.There was some obvious comfort in his posture when the blessing was complete. Shortly after, Don decided to have some Hydromorphone, and regularly every hour for pain. Once the pain medicine was accepted regularly, I was able to find the source of his pain.

His hip area was hurt/injured when the hospice nurse gave him a phenobarbital suppository. I was not present at this time, I was sleeping. The respite caregiver was on duty and the nurse showed up to check Don and admin the phenobarb. I came to find that he was moved to the bed and laid down to apply. Don has a power recliner that will lay completely flat, I don't understand why he was moved. After making sure he was comfortable, I called the hospice team and made them aware of
the situation.

We had a loooong night. I will never forget the sight of him in so much pain and asking me not to help him. In so much pain, and pushing me back away from him. I respected him and sat in silence, holding back my frustration and trying to hold back my tears. I believed he may have thought I would see him in so much pain and not keep my promise of only giving him pain medications. I reassured him he could trust me and slowly....we began to lessen his pain.

The afternoon today came with a hospice nurse call to schedule his daily visit. I requested that the nurse that came yesterday, should not be put into rotation at our home. The visit brought a sight for sore eyes. A loving, compassionate, soft spoken and nurse with years of knowledge.We had a great visit and she helped to arrange pillows to maximize possible rest positions for Don. This visit brought a calm over Don and a recharge to my drive.

Now I sit typing out my thoughts and experiences while my respite caregiver sits with Don. Her name is Melody, she was here last night with her husband (Jeremy). Her husband watched over Don while I rested on the couch. Melody sat out in the living room with me, I did not want to overwhelm Don with too many people. Especially new faces. Melody is new as a caregiver but seems to be a natural human being and loving person.

I type to share with everyone and to NEVER forget these days of my life. A small trivial little chunk of my last that lifetimes of lessons have been taught to me and learned. I am only 36 years old.... but still learning. My elders were right, I will never stop learning and I will never "figure" it all out.

Thank each and every one of you for your kindness. I was flushed with comfort from each response I read. I will thank you each individually, soon. My eyes burn and my heart is heavy.

May God bless you and hold you close.

Helpful Answer (5)

This evening, I had to make an adjustment to the Hydromorphine. Due to growing hip pain, he needed the it every 45 minutes. I would prepare the medicine and sit in front of him and explain what it was with the bottle.

Then I would make sure Melody (my respite caregiver), was ok and he to my chair in the living room. The whole time Don has been in hospice I have set up many things to monitor him. I had intercoms, but he could not use it with his failing vision and limited hand/arm use. I set up a wireless camera that would stream via the internet. I would carry my laptop around if I left the room. When my respite team showed up, I would take the laptop with me and set it on the table next to the couch. I really could not sleep without taking a look once in a while at the camera. I needed to make sure that if he was in pain, I would know about it.

It was 15 minutes until his next dose of pain medication as I sat back in the couch. I fell asleep.....just a minute to rest. I woke up with Melody calling for me. It was time. I ran into the room and sat on my foot stool. I placed his hand in mine and began to say goodbye to my best friend.

I said to him, "It's Shawn, I'm here. It's you and me. God is here to lift you up and take you home. I love you and will never forget you. Let the pain and suffering end. I'm here with you. You are not alone my friend." His last breath was long and slow, then nothing. I began to recite The Lords Prayer and he started to exhale again. It startled me. Time had stood still. I looked at the time on my watch and let the second hand go around twice as I continued to pray. His breath was gone. I checked for a pulse on his neck. It was over.

I pray, Hail Mary. I opened my arms up wide to my sides and thanked God. Thanked God for helping to lift Don up and carry him home. I thanked God for ending his
suffering on earth.

Don passed away at 8:05pm on April 8,2013. I waiting a little while in silence as a calm passed over my body and mind. I let my girlfriend know he was gone and then called his VA doctor. His VA doctor is an amazing man. He had nothing to do with the hospice program but still called everyday to see how I was doing and making sure I was taking care of myself. I left a message for him and notified another friend of ours.

I asked Melody if she was okay and she was fine. We spoke for and shared life experiences for a few moments. I then called hospice to let them know. They sent a nurse out and called the funeral home. The nurse showed up, removed the catheter
and destroyed the medications. The funeral home showed up a short time later and discussed the paperwork.

I asked them to wait until I made it down to my room before they carried my friend away. I then led them into the room and said my final goodbye. I kissed him on the
forehead and promised we would see each other again.

My girlfriend and I went downstairs to talk and remember our friend. After about an hour, I did not hear any more noise upstairs. I went up to his room and sat on his bed. I looked around the room and thanked God for his kindness and mercy. I will miss Don and keep him in my heart for all times. I will cherish the time we spent together and the memories made. He made me a better man.

To all of you kind people, I thank you, I thank you. Hugs and Love to all.

Helpful Answer (5)

As a retired ltc/hospice nurse, I found Haldol not the best choice in meds for end of life. For agitation sl ativan liquid (drops) worked better & is short acting. Hospice should have various meds available if others aren't effective for symptoms!
Helpful Answer (4)

Thank you Carol,

I asked for the advice of the hospice nurse this morning. She agreed that
helping him out of his chair further could result in injury. You put it very well Carol,
causing him pain would tear me apart. The nurse was vary vague about how to handle the
wanting to stand. I have been trying a few things that have helped in the past couple of

What happend next caught me off guard. I was asked if I believed increasing
his haloperidol would be a good idea to help Don relax. Given that it did
help him relax and is in liquid form, I agreed. I was shocked that
I was included in the decision.

The nurse gave him 1.0 mil Haloperidol and it took him 1 1/2 hours to fall asleep. He woke
up a little over 2 hours later, restless and trying to get out of his chair. I feel so
bad right now. I had to give him methadone while he was up. I didn't want to wake him after
finally falling asleep. Then more Haloperidol about 15 minutes ago. He is still restless.
I wait...............

Thank you Christina,

I ask Our Father that Don may know peace from his suffering. I ask The Lord
to meet Don and guide him home to be free. I ask for the strength to help carry
him if he falls and help him home.

I thank you all for the advice and kind words.

Helpful Answer (3)

Sean, what your friend is experiencing is very normal, where he is feeling the need to go is nowhere here on earth. I just read your profile and all I can say is you are truly God's gift to Don. God Bless you and lift you, comfort, encourage you, and give you peace.
Helpful Answer (3)

It's not the easiest thing to endure...the dying process is grueling and agonizing and no one truly knows until they have endured it. I know that my mom was bed ridden for almost a week and all of a sudden she had the strength to stand up on her own and was ready to go stand in line with the others. I don't know what she meant by that. But all I can figure is she was waiting for her turn to enter the pearly gates. She was even packing up her bedding like she was moving out. Mom was also on Haloperidol drops and lorazepam. But when she stayed in the Hospice House the last week she was alive they gave her Morphine drops in her cheek. The Morphine was more for the stress and for the breathing, she was given Atropine for the excess saliva. I'm sorry there ares so many out there who are on this journey...But one thing for sure. Caregivers have the biggest hearts and will be blessed for what they do or have done.
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After reading this I had to stop for a minute and everything came back to me full circle my fathers last days. While tomorrow it will be a month already it is still so raw and hard without him..I had such a time with that Halperidol and when I thought I was giving him too much I found out later I was not giving him enough. I was always conscious about it since he was on other meds and he had not been eating his usual foods. I was giving my father only .2 ml and never a full one like the people had told me. So I looked at my notes and I was only giving him ,2 and a half. I think once I had given him one whole dropper full but I was always nervous because in the beginning I did not know what or how he would react. I recollect now he said to give him more the day before..little did I know my Poppa was on his journey. I knew something was wrong and was waiting patiently for the nurse to come the following never happened. I had been keeping a notepad by the bed that whole week (Ihad never did that in the entire 27 months I cared for him) and I was monitoring his BP and HR and jotting down that medicine I was given him. The agitation was bad and I tried so much to get him to calm not realizing he was going through the process. I had no nurse here.It was me and my son tending to him that night. I second guessed myself on everything I did and even told the doctors and the officer here did I do something wrong to cause this and they said NO..but I felt like if I had did something wrong I would of died Dad was my world and now it seems that me too everything is crumpling around me as my other family members have not been here so I have finally said I have to let that hurts so much on top of the pain I am in but they must be grieving in their own way I still hurts. I know it was a hard morning that morning everyone was here and the house was jammed up..removing Dad from his bed and out the door was the hardest part for me and my son. His hair I can still see his hair shining in the sun and his beautiful face in the son with the US Flag drapped over him..I collapsed after that..My son was having a really hard time and every since that day I have been numb. Things are starting to come back to me now...but I have thoughts of Daddy in the coffin down in that dirt that make me shudder..oh the pain of loss is horrible even though I knew one day he would leave it is the hardest and worst time I am going through. Love them while they are around because once they are gone there is a void like no other and nothing or no one will ever replace it. I felt like I died too:( I must maintain some sort of strength from the Good Lord to hold me up and help me get through this time. Will I ever get over my father NEVER EVER. He was a big part of my world and I am lost without him. Back to your inquiry - when he gets too bad you might want to think about taking him to the hospital so he will not fall as you will have more complications and more stress should that happen. The night before my father passed he fell off the bed at 5 am and my son had to get him up..Joe has a hard time looking down at the floor and remembering that. I told him if it was not for you to help Poppa who could of did it. I will have to write the story one day when I am bit stronger but for now just love them up the best you can. I was totally stressed out with everything and my body was also shutting down as they said I was on the verge of exhaustion. I kept going. I kept doing. I do not regret any of it but now I must take care of my health. Dad would want that. We all need to take care of our health because Caretaking will whip you so bad you don't know what day it is sometimes..Best of love and wishes as you go through this most difficult process. God Bless.
Helpful Answer (2)

Roxinal (Morphine) sublingually helps with agitation also, Oxygen for comfort, We also used a type of eye drop (sl) for excessive secretions....scopolamine? I apologize; it's been a while. This type of agitation is common near the end esp. with men more than women. Environmental stimuli (bright lights, noise, too many visitors can increase agitation) Just holding his hand, speaking gently & giving comfort go a long way. A damp cool washcloth to the lips/forehead also soothing. Soft music. God Bless you for being there.
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